To describe his battle against psoriasis, Alan Eisenberg likes to quote John Paul Jones, the famed Revolutionary War mariner: “I have not yet begun to fight.”
For six years, the Portland, Ore., resident has been trying treatments for his skin condition. Methotrexate helped his nails, but didn’t cure the skin outbreaks. He says the prescription drug Enbrel worked for six months, then lost its effect. Another drug gave him hives. Yet another worked better, but put him at risk of infections. He had to stop using it when he had a hip replaced due to arthritis related to his psoriasis.
Pustular psoriasis is a rare skin disease. It makes your skin become red and painful with raised, pus-filled bumps.
People of all ages and races can get pustular psoriasis. Men get the disease as often as women do. The average age of someone who has the disease is 50. Children don't get pustular psoriasis very often, but when they do, more boys than girls get the disease. It's rare among children ages 2 to 10.
Still, the retired bus driver and union organizer keeps a sense of humor, joking as he reels off the highlights of his fight against the autoimmune disease.
In most cases, doctors can find a treatment that brings this disease under control, several psoriasis experts told WebMD. But the process can take trial, error, and time.
“A huge part of the first visit with patients is breaking the good news and bad news to them. The bad news is they have a chronic disease that is incurable. The good news is there are many treatments available to keep it under control,” says Andrew Blauvelt, MD, of the Oregon Health and Science University in Portland.
“The goal of therapy is to hit on something that works and is safe, and it sometimes takes several tries to find something that works for an individual without side effects,” he says.
Finding the Right Option May Take Some Experimenting
During psoriasis, a person’s immune system acts up, causing skin cells to grow at a faster pace. This causes red patches, which may be rough and scaly. The disease is caused by different genetic glitches in different patients, says Blauvelt, a psoriasis expert who, like the other doctors quoted in this story, has done work on behalf of pharmaceutical companies. Not only does a person’s genetic makeup determine how the disease shows up, it also plays a role in whether treatments will work or not.
“Each person’s response is really individual and different,” says Abby Van Voorhees, MD, of the University of Pennsylvania Health System in Philadelphia. Doctors can offer about a dozen treatments, she says. “I caution my patients that while the first one might not be successful, they really need to hang in there. Most often we can find a modality that will work.”